Me – On my Cystic Fibrosis (CF)

Disclaimer: this is just my own thoughts and understanding of my illness. Each person has different experiences and I may not be right about some of the medical information as it is just my understanding of it all.

I have often been asked what it is like having Cystic Fibrosis (CF). The main problem with this question is I don’t know what life is like without it.

Today though I’m going to try and answer this question as best I can.

For starters I’m probably not the best example of a ‘typical’ CF patient. I’m actually (Luckily) reasonably healthy.

That doesn’t mean it doesn’t effect my life.

CF is kind of like having a chest cold.

All the time.

Sometimes I wake up feeling like someone poured cement into the bottom of  my lungs overnight. My lungs feel heavy like a weight I’m carrying around.  While like most people I don’t have to think about breathing it’s definitely something I notice.

Real colds roll into chest infections and chest infections lead to more cement feeling, more coughing, more fatigue and more of a likelihood of ending up in hospital.

Fortunately I seem to get away with around one hospitalisation a year these days but that wasn’t always the case. The combination of teenage hormones and school stress meant I spent almost  quarter of my last two years of school in hospital.

I’ve meet many people in life who haven’t been to hospital since birth or at worse have only gone for broken bones but to me hospital is almost like a second home. While this is mostly attributed to the numerous hospitalisations over the years it also stems from the many outpatient appointments I also attend. Regular check up clinics, vitamin B injections, many different blood tests, chest X-rays, bone mineral density scans, physio appointments and so on.

But It’s not all about my lungs.  I can’t digest nutrients properly either. CF’s have a ‘high fat, high salt, high sugar’ diet and while this can be viewed as  an up side you have to understand the reasoning behind it to understand what we go through. Firstly high salt. The overall problem of CF is a salt issue. As part of that CF’s lose a lot more of their salts then most people do. If you were to lick my arm on a salty day it would taste like you were liking up salt. So the high salt is to help keep our electrolytes in order.

Secondly, high fat. CF’s with a pancreatic deficiently (like myself) don’t naturally produce the enzymes needed to absorb a lot of important nutrients like fats and vitamins. While we do have medications that help with this we still absorb a lot less then a regular person would . Its important for CF’s to keep up their fat stores so they have the extra fuel necessary to help with fighting off infections. So as we cant absorb as much from the same amount of fats we have to eat more to make up the difference. Unlike most western women I’ve grown up being told that I need to Put/keep weight on not lose it.

Thirdly, high sugar. We have to eat extra fats to build up our stores so its counter productive to then use up those stores for the everyday running of our bodies systems. This is where the sugar comes in. With a higher/more constant sugar intake it means our bodies are using the sugar energy (which is the bodies preferred energy source as its easier to use) rather than constantly breaking up our hard earned fat stores.

So while yes I can (and do) eat whatever I want and not feel guilty about it there are consequences for me if I don’t keep it up.

Of course there are also consequences to eating so much junk food as well but as a doctor apparently once said in a question about these consequences ‘at least they’ll live long enough to be effected by it’.

I’m sure there is much more I could say about it but that’s all I’m going to write about it for now.  If you have any specific questions I’m happy to answer them and I may even do another post expanding on this another day.

For now thanks for reading a little more about me.

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